BackgroundIn the last 20 years, the chances for intact survival for extremely preterm infants have increased in high income countries. Decisions about withholding or withdrawing intensive care remain a major challenge in infants born at the limits of viability. Shared decision-making regarding these fragile infants between health care professionals and parents has become the preferred model today. However, there is an ongoing ethical debate on how decisions regarding life-sustaining treatment should be reached and who should have the final word when health care professionals and parents do not agree. We designed a survey among neonatologists and neonatal nurses to analyze practices, difficulties and parental involvement in end-of-life decisions for extremely preterm infants.MethodsAll 552 physicians and nurses with at least 12 months work experience in level III neonatal intensive care units (NICU) in Switzerland were invited to participate in an online survey with 50 questions. Differences between neonatologists and NICU nurses and between language regions were explored.ResultsNinety six of 121 (79%) physicians and 302 of 431(70%) nurses completed the online questionnaire. The following difficulties with end-of-life decision-making were reported more frequently by nurses than physicians: insufficient time for decision-making, legal constraints and lack of consistent unit policies. Nurses also mentioned a lack of solidarity in our society and shortage of services for disabled more often than physicians. In the context of limiting intensive care in selected circumstances, nurses considered withholding tube feedings and respiratory support less acceptable than physicians. Nurses were more reluctant to give parents full authority to decide on the course of action for their infant. In contrast to professional category (nurse or physician), language region, professional experience and religion had little influence if any on the answers given.ConclusionsPhysicians and nurses differ in many aspects of how and by whom end-of-life decisions should be made in extremely preterm infants. The divergencies between nurses and physicians may be due to differences in ethics education, varying focus in patient care and direct exposure to the patients. Acknowledging these differences is important to avoid potential conflicts within the neonatal team but also with parents in the process of end-of-life decision-making in preterm infants born at the limits of viability.Electronic supplementary materialThe online version of this article (10.1186/s12887-018-1040-z) contains supplementary material, which is available to authorized users.

Our retrospective study presents and evaluates clinical ethics consultations (CECs) in pediatrics as a structure for implementing hospital-wide ethics. We performed a descriptive and statistical analysis of clinical ethics decision making and its implementation in pediatric CECs at Zurich University Children's Hospital. Ninety-five CECs were held over 5 years for 80 patients. The care team reached a consensus treatment recommendation after one session in 75 consultations (89 %) and on 82 of 84 ethical issues (98 %) after two or more sessions (11 repeats). Fifty-seven CECs recommended limited treatment and 23 maximal treatment. Team recommendations were agreed outright by parents and/or patient in 59 of 73 consultations (81 %). Initial dissensus yielded to explanatory discussion or repeat CEC in seven consultations (10 %). In a further seven families (10 %), no solution was found within the CEC framework: five (7 %) required involvement of the child protection service, and in two families, the parents took their child elsewhere. Eventual team-parent/patient consensus was reached in 66 of 73 families (90 %) with documented parental/patient decisions (missing data, n = 11). Patient preference was assessable in ten CECs. Patient autonomy was part of the ethical dilemma in only three CECs. The Zurich clinical ethics structure produced a 98 % intra-team consensus rate in 95 CECs and reduced initial team-parent dissensus from 21 to 10 %. Success depends closely on a standardized CEC protocol and an underlying institutional clinical ethics framework embodying a comprehensive set of transparently articulated values and opinions, with regular evaluation of decisions and their consequences for care teams and families.

Aim: Studies have provided insights into the different attitudes and values of healthcare professionals and parents towards extreme prematurity. This study explored societal attitudes and values in Switzerland with regard to this patient group.Methods: A nationwide trilingual telephone survey was conducted in the French-, Germanand Italian-speaking regions of Switzerland to explore the general population's attitudes and values with regard to extreme prematurity. Swiss residents of 18 years or older were recruited from the official telephone registry using quota sampling and a logistic regression model assessed the influence of socio-demographic factors on end-of-life decision-making.Results: Of the 5112 people contacted, 1210 (23.7%) participated. Of these 5% were the parents of a premature infant and 26% knew parents with a premature infant. Most participants (77.8%) highlighted their strong preference for shared decision-making, and 64.6% said that if there was dissent then the parents should have the final word. Overall, our logistic regression model showed that regional differences were the most significant factors influencing decision-making.

Aim Due to scarce available national data, this study assessed current attitudes of neonatal caregivers regarding decisions on life‐sustaining interventions, and their views on parents' aptitude to express their infant's best interest in shared decision‐making. Methods Self‐administered web‐based quantitative empirical survey. All 552 experienced neonatal physicians and nurses from all Swiss NICUs were eligible. Results There was a high degree of agreement between physicians and nurses (response rates 79% and 70%, respectively) that the ability for social interactions was a minimal criterion for an acceptable quality of life. A majority stated that the parents' interests are as important as the child's best interest in shared decision‐making. Only a minority considered the parents as the best judges of what is their child's best interest. Significant differences in attitudes and values emerged between neonatal physicians and nurses. The language area was very strongly associated with the attitudes of neonatal caregivers. Conclusion Despite clear legal requirements and societal expectations for shared decision‐making, survey respondents demonstrated a gap between their expressed commitment to shared decision‐making and their view on parental aptitude to formulate their infant's best interest. National guidelines need to address these barriers to shared decision‐making to promote a more uniform nationwide practice.

ObjectivesThe aim of this research is to assess causes and circumstances of deaths in extremely low gestational age neonates (ELGANs) born in Switzerland over a 3-year period.DesignPopulation-based, retrospective cohort study.SettingAll nine level III perinatal centres (neonatal intensive care units (NICUs) and affiliated obstetrical services) in Switzerland.PatientsELGANs with a gestational age (GA) <28 weeks who died between 1 July 2012 and 30 June 2015.ResultsA total of 594 deaths were recorded with 280 (47%) stillbirths and 314 (53%) deaths after live birth. Of the latter, 185 (59%) occurred in the delivery room and 129 (41%) following admission to an NICU. Most liveborn infants dying in the delivery room had a GA ≤24 weeks and died following primary non-intervention. In contrast, NICU deaths occurred following unrestricted life support regardless of GA. End-of-life decision-making and redirection of care were based on medical futility and anticipated poor quality of life in 69% and 28% of patients, respectively. Most infants were extubated before death (87%).ConclusionsIn Switzerland, most deaths among infants born at less than 24 weeks of gestation occurred in the delivery room. In contrast, most deaths of ELGANs with a GA ≥24 weeks were observed following unrestricted provisional intensive care, end-of-life decision-making and redirection of care in the NICU regardless of the degree of immaturity.